Thursday, March 7, 2013

That's a stupid headline

I have Crohn's. Severe Crohn's. The kind of Crohn's that was so bad I had to have a blood transfusion and several different (fairly minor, so far) surgeries, not to mention suffering from an inability to eat and resulting rapid weight loss. The only medicine that has worked so far is Remicade, and while its effect has been pretty well (pardon the term) miraculous, I'm always aware that it may stop working, and I may go back to the hell of slowly bleeding and starving to death.

So naturally, when I see a headline that says CURING CROHN'S? MAN SAYS HE FOUND WAY TO BEAT INCURABLE DISEASE, even on Fox News, my ears perk up. Alas, when I clicked on the article, I found very little useful information. The gist of it is that the guy stopped smoking, severely altered his diet (his wife is a "holistic nutritional counselor," which does not inspire confidence), and started doing triathlons. (The last is not particularly helpful, as when I was suffering the worst Crohn's symptoms I couldn't even walk around the grocery store without dashing for the bathroom, let alone jog around the block). He then started taking some oddball supplements (is cat's claw really what it sounds like??- ETA: a Google search shows it's a woody vine with supposed immune system boosting effects, none of which have been proven scientifically) and weaned himself off the medicines (6MP and steroids) he was on. He's been well for quite a while.

But here the article admits, "...although he realizes he fundamentally cannot be ‘cured’ of an incurable disease, he and Kummer (his doctor) can agree he is in remission – for now." The doctor added,"“He got better because of the 6MP (a medication) and he took it for a long time. We have an objective measure of him getting better, and he felt good, so he stopped taking it – and he continued to feel good. But, that’s the mechanism of the drug."

The article goes on to say that the guy thinks his new lifestyle made a difference too. Well, maybe it did. So what? This isn't a "cure" and it surely won't work for every Crohn's patient. (I was on 6MP for a while too, right around the time I had to have blood transfusions. For me it was totally worthless. Steroids didn't do much for me either, other than give me a moon face.) He also says, "The difference between being cured and being in remission is that it will never take over my life again. I’ll know how to handle it, and it’ll be a very different situation. I’m ‘cured’ because I’ll never be held hostage by Crohn’s again."

Maybe, maybe not. The thing about Crohn's is that it changes. If they remove an affected part of your colon, you get it in another part of your colon. If they take out your entire colon, you get it in your small intestine. Sure, sometimes it goes into remission for good, but you can never be absolutely certain that you'll "never be held hostage by Crohn's again." I wish this guy the best of luck, but the headline is really irresponsible (who cares what the patient thinks? What matters is what the doctor thinks. He's the one with the medical degree, for crying out loud), and I kind of resent the implication that anyone can be cured if they just apply themselves. Unfortunately for all of us who suffer from the disease, Crohn's just doesn't work that way.